Compassion Fatigue

My mom didn’t know she had compassion fatigue, since nobody named for her this extreme caregiving stress back when she was looking after her mother, who was in her 90s and had Alzheimer’s disease. By the end, Mom was dutifully visiting the nursing home day after day for hours, where she’d not only quietly tend my grandmother but also became such a familiar face that she also felt she had to stop and greet half the other residents, visit Gram’s barely-verbal roommate, bring treats to the nursing staff, and so on.

It was compassionate. But it was also taxing. And it added up to compassion fatigue. Compassion fatigue is a recognized stress disorder that often affects people in healthcare. But family caregivers are just as vulnerable. “Grieving by inches” is how compassion fatigue expert Sherri Showalter, a social worker in Tarpon Springs, Florida, describes it.

My mom didn’t stop making the daily visits until her own doctor ordered her not to. As her own health began to suffer, he suggested she cut back the nursing home visits to every other day. She’d known in her heart this was necessary, but it wasn’t until she had official “permission” that she felt okay about putting herself first.

Yet this is exactly the solution to compassion fatigue: stop caregiving – not forever, just for a day. Preferably a whole day.

Turning off your caregiver brain temporarily turns off caregiver stress. (You don’t have to turn off your heart; obviously you still care. But this is about self preservation, and without the calm and energy that come from self nurturing, you simply can’t nurture anybody else very well or very long.)

To find a day-long break from compassion fatigue, Showalter and others suggest:

First, realize what’s happening to you.
Stress sneaks up. We might not feel miserable, but we start to add pounds, sneak extra cigarettes, grouse at the spouse. Caregiving stress strikes not just because the tasks rob our free time and our sleep. It infects our emotions. “Sometimes you can feel like you want to go out and bite the tires on the car because it’s so frustrating,” Showalter says. “There’s a lot of grief, on top of guilt because we feel we shouldn’t be grieving for someone who’s still living. Self care is not optional.”

Make the commitment, and recognize excuses as no excuse.
It took my mom a physician’s stamp of approval to give herself a break. Ask yourself what’s stopping you from giving yourself permission to take a break: Guilt? Money? The time involved in setting up replacement care? Those are all legitimate issues, but ultimately they’re self-imposed roadblocks because there’s a way around each of them.

Look close to home.
Can a family member (sibling, partner, aunt, uncle) step in for a day? Even a competent teenager may be able to “grandparent-sit,” and both generations may especially enjoy the change of pace. Ideally, set up a once-a-week system.

Consider a trade.
Know another family caregiver with whom you can pool time? It doesn’t have to be another person involved in eldercare. Caregiving stress and compassion fatigue affect those responsible for young children and disabled people, too.

Look into community services.
Contact your local area agency on aging to learn about resources in your community such as adult day programs (which range from craft lessons to dementia care) and other respite programs (which can include drop-in and day-long programs, even overnight care). Many services are low-cost or free.

Hire an elder companion.
Local agencies can also point you to home health companies that offer this wonderful service: Professionals who will sit and play cards or talk to your loved one, take him or her to lunch or doctor appointments, and otherwise fill the role of attentive, trusted friend for a few hours a week.

Start small.
If you can’t go for a day, go for half a day. Go to lunch and a movie. Just do it, and do it regularly.

Make it a genuine escape.
Ideally, don’t use this time to run a million other errands or to attend a support group where you continue to talk and think about caregiving. Instead, get back in touch with your real self: Eat your favorite foods, do something you truly enjoy, whether alone or with favorite people.

Learn to trust.
No, someone else might not prepare the food or anticipate your loved one’s needs exactly the way you do. Nobody can replace you. But many people can ably substitute for you on an as-needed basis.

Make your escape complete.
Leave a cell number for emergencies, but resist calling in yourself to check on the person. Be selfish in a good way…as in, focused on yourself.

Compassion fatigue is brutal. The goal is to forget caregiving stress awhile in order to recharge. You deserve it. But moreover, so does the person you look after. Think of the time you spend away as a way to improve the time you spend together.

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